Ok, so I realized I might have lost it a little when in the process of recovering from major abdominal surgery, cancer, and chemo-induced menopause at 45, I recently got a body rash from using a different laundry detergent and screamed at the plastic container, "Is that all you've got!"
Let's cut to the chase. We all hate being sick, ill, out of sorts. There are endless commercials that promise to ease our ills with medications that have side-effects that are worse the what they claim to cure. My husband and I laughed at one the other night that proclaimed, "if you have experienced death from using an acne treatment you could call the 800 number on the screen", WHAT!
I must admit I figured that when the doc mentioned the golden ticket called remission that everything that I had experienced would magically disappear, not so! My GP explained it like this, "Listen Shurie, let's pretend you are a marathon runner. What do marathon runners do at the end of the race while everyone is jumping up and down and cheering for them? THEY COLLAPSE. That is what your body is doing. Give it time to rest and recover. You have just run the race of your life."
So I ask you, what is your race? I have been extremely sick for about 7 months. For some it's more, some less. I just heard about one women who is still staying in the hospital for a rare blood condition and visiting her family when she can after 6 years! I don't know about you but I don't think I could pull that off. I'm no hero. I didn't like even having a little cold before this. I have had a lot of people tell me that they think I am brave but I don't feel brave. I feel tired and sometimes discouraged at my lack of progress. Sure, I'm glad to be alive. Sure, I've come a long way. I still have a long way to go. I am now just able to walk my little dogs around the school by my house. I used to run around it two to three times. Man, my legs and backside sure hurt. I look at my awesome vintage beach cruiser with longing. I have dreams of running with the wind whipping through the hair I don't have. I get grumpy at commercials (I watch a lot of t.v. lately) of people romping around and having what seems like the time of their lives while I'm sitting at home working a cross stitch in my slippers. I am tired of bland food. I went crazy and visited the new local cup cake store which I'm sure by the way they have on every corner in Heaven. Did I sample? You bet I did brother! Did I pay for it? You bet I did, in many ways but well worth it!
Thank you for letting me vent. So what do we do with all this. We sure don't listen to bad advice. Here's an example, "Look on the bright side, you could have (insert ridiculous remark here)." Here is another gem, "At least you have (insert unhelpful adage here)." We sure don't surf the web for our condition and hang on to the worse story available, positive that that we be our demise. Don't believe statistics or medical reports that promise doom. Believe me, we all get hit with this stuff. Resist the temptation and throw out the junk. Keep the good. No, this is not easy for me to say. I'm right there with ya. Sometimes I get really down. Sometimes I just cry. Sometimes I get angry and yell at God. Go ahead, he can take it. You know what though, when I am proactive I feel better. I search for "constructive" info or advice on the web or in books. I listen to encouraging advice and stories from people who have been there and are doing better now. I listen to inspirational music. I journal and write down my experiences. I pray and still hold out hope that every day I get a little closer to being completely well again. I set little goals for myself every day that keep me going and give me a reason to get up.
So hang in there, keep fighting by putting one foot in front of the other. You will have your good days and bad ones too. I know I do. Most of all remember you are not alone even though you may feel like it at times.
Stay tuned for the next post, "A Word On Faith"
Sunday, January 30, 2011
Wednesday, January 26, 2011
"Yes, I Have Cancer." Connecting With Other People
The conversation went something like this:
"How have you been doing?"
"Not so hot, I have been diagnosed with cancer."
She looks at my lack of hair under my hat, "I can see that. Well take care of yourself and good luck with that." Not exactly the cup half-full kind of pep talk. When my husband and I got in the car we laughed.
People handle the illness of others in many different directions. All over the map you might say. Some don't even seem to be from the same planet. I have been told by my closest friends, you know the ones, those you have sat and listened to for hours pouring out their hearts to you in their crisis situations, that they didn't want to call and "bother" me. I have had seemingly mere acquaintances call me every single day just to "check in." Then there are the true gems. These are the people who just call and say, "I am making mac and cheese and would you like me to bring it over?" They come and hug and go. Their are those who send get well cards and those who send email and some who leave you messages on Facebook (a great source for mass communication by the way). Some people just don't have a clue what to say so they don't say anything. I have a hard time with the last one. How hard is it to smile at somebody and say, "I have been thinking of you?" And I am just talking about the people you know here.
I have noticed that in public I can sometimes feel someone staring at me and turn around to find a knowing smile. I wonder if they have gone through what I have? I have also had people avoid me. I don't think it's me personally, maybe it is the reality of their own mortality hitting them. We are all susceptible to illness, maybe some just don't want to "go there". What about survivor complex? I have often felt bad around somebody who I know has lost a loved one to cancer. I guess I feel bad for living through it when others haven't.
In the beginning it was difficult for me to juggle everything. I was dealing with recovery from surgery and the effects of chemo every two weeks much less trying to deal with what other people felt. Then when I started going out into the public I began to felt self-conscious. I just knew that everyone knew I had cancer. The reality is that most people were busy and hardly noticed. When they did they were usually polite and I was the one to bring it up. Due in part to the latest cancer fighting campaigns and television commercials, I think more people have empathy and are supportive. I have had more than a few tell me to keep up the fight. It seems like everywhere you go there is somebody who has been affected by this disease.
The best advice I can probably give you is to be honest with yourself and with others. Being honest with yourself means that you are aware of the fact that there are just some things you cannot do right now. And by the way, you do look different. Know your limits. Turn down offers of visits and activities that you just aren't up to. Allow people to help you if you need it. Being honest with others is being open about your condition. Allow people to ask questions. I had one woman come up to me and ask me if I was sick. Instead of becoming defensive, I smiled and said, "Yes, but I am better than before." She just wanted to offer to pray for me. A young girl who worked with my daughter wanted to ask me some questions but was too afraid to ask. Her father had cancer and wasn't doing too well. My daughter told me and I made it a point to tell her about my experience. Be honest with your loved ones. If you feel crummy say so. Don't think you have to be a superhero. We have bad days and we can't carry the load on our own. We were designed to share with others.
In a recent article I read, "You will waste your cancer if you let it drive you into solitude instead of deepening your relationships. Our culture is terrified of facing death. It is obsessed with medicine. It idolizes youth, health, and energy. It tries to hide any signs of weakness or imperfection. You will bring huge blessing to others by living openly, belivingly, and lovingly within your weaknesses. Paradoxically, moving out into relationships when you are hurting and weak will actually strengthen others. Your need gives others an opportunity to love." I myself tend to withdraw when I have a problem but have found the above statements to be true. My marriage, family relationships, and some friendships have grown stronger within the midst of my illness.
I encourage you to reach out and connect with other people. Read about other's experiences so you don't feel alone and contribute to the conversation. There are many support groups and online resources for you. Ask around or research on your computer. Above all don't withdraw and isolate yourself. It is ok to want time alone but reaching out will contribute greatly toward your healing. And you have a lot to offer!
Stay tuned as next time we will talk about, "I'm Sick Of Being Sick!"
"How have you been doing?"
"Not so hot, I have been diagnosed with cancer."
She looks at my lack of hair under my hat, "I can see that. Well take care of yourself and good luck with that." Not exactly the cup half-full kind of pep talk. When my husband and I got in the car we laughed.
People handle the illness of others in many different directions. All over the map you might say. Some don't even seem to be from the same planet. I have been told by my closest friends, you know the ones, those you have sat and listened to for hours pouring out their hearts to you in their crisis situations, that they didn't want to call and "bother" me. I have had seemingly mere acquaintances call me every single day just to "check in." Then there are the true gems. These are the people who just call and say, "I am making mac and cheese and would you like me to bring it over?" They come and hug and go. Their are those who send get well cards and those who send email and some who leave you messages on Facebook (a great source for mass communication by the way). Some people just don't have a clue what to say so they don't say anything. I have a hard time with the last one. How hard is it to smile at somebody and say, "I have been thinking of you?" And I am just talking about the people you know here.
I have noticed that in public I can sometimes feel someone staring at me and turn around to find a knowing smile. I wonder if they have gone through what I have? I have also had people avoid me. I don't think it's me personally, maybe it is the reality of their own mortality hitting them. We are all susceptible to illness, maybe some just don't want to "go there". What about survivor complex? I have often felt bad around somebody who I know has lost a loved one to cancer. I guess I feel bad for living through it when others haven't.
In the beginning it was difficult for me to juggle everything. I was dealing with recovery from surgery and the effects of chemo every two weeks much less trying to deal with what other people felt. Then when I started going out into the public I began to felt self-conscious. I just knew that everyone knew I had cancer. The reality is that most people were busy and hardly noticed. When they did they were usually polite and I was the one to bring it up. Due in part to the latest cancer fighting campaigns and television commercials, I think more people have empathy and are supportive. I have had more than a few tell me to keep up the fight. It seems like everywhere you go there is somebody who has been affected by this disease.
The best advice I can probably give you is to be honest with yourself and with others. Being honest with yourself means that you are aware of the fact that there are just some things you cannot do right now. And by the way, you do look different. Know your limits. Turn down offers of visits and activities that you just aren't up to. Allow people to help you if you need it. Being honest with others is being open about your condition. Allow people to ask questions. I had one woman come up to me and ask me if I was sick. Instead of becoming defensive, I smiled and said, "Yes, but I am better than before." She just wanted to offer to pray for me. A young girl who worked with my daughter wanted to ask me some questions but was too afraid to ask. Her father had cancer and wasn't doing too well. My daughter told me and I made it a point to tell her about my experience. Be honest with your loved ones. If you feel crummy say so. Don't think you have to be a superhero. We have bad days and we can't carry the load on our own. We were designed to share with others.
In a recent article I read, "You will waste your cancer if you let it drive you into solitude instead of deepening your relationships. Our culture is terrified of facing death. It is obsessed with medicine. It idolizes youth, health, and energy. It tries to hide any signs of weakness or imperfection. You will bring huge blessing to others by living openly, belivingly, and lovingly within your weaknesses. Paradoxically, moving out into relationships when you are hurting and weak will actually strengthen others. Your need gives others an opportunity to love." I myself tend to withdraw when I have a problem but have found the above statements to be true. My marriage, family relationships, and some friendships have grown stronger within the midst of my illness.
I encourage you to reach out and connect with other people. Read about other's experiences so you don't feel alone and contribute to the conversation. There are many support groups and online resources for you. Ask around or research on your computer. Above all don't withdraw and isolate yourself. It is ok to want time alone but reaching out will contribute greatly toward your healing. And you have a lot to offer!
Stay tuned as next time we will talk about, "I'm Sick Of Being Sick!"
Saturday, January 22, 2011
What's The Deal With Side-Effects!?
First off let's come to the conclusion that everyone is different. I am not claiming to be an authority or to have extensive medical education. There are different kinds of cancer and different treatments and different side-effects. I only know what I have experienced and what I did to get some relief. I quickly found that I wasn't given adequate info and found myself frustrated and searching for answers in books and on the internet. Thank God for my husband and mom who were my support crew. Sometimes it took all three of us to pray, search for answers, argue with nurses, interrogate pharmacists, and scour the net. I was told by my doctor that they "hope for the best" in every situation which was supposed to be an answer to "why didn't somebody tell me this was going to happen to me?!"
This is by no means the whole list of side-effects but I would strongly encourage you not to go to lists (they are very long) because they will only scare you and you will end up looking for things to happen to you. Try to only look up side-effects that you are currently experiencing and their treatments. A good resource is www.chemocare.com but there are certainly others and forums you can join for questions, info, and support. I belong to www.cancerforums.net which is free to join and has people with your specific diagnosis that you can talk to. I found that these side-effects were mostly chemo-related and eventually faded after treatment. Now let's get crackin' and name some names!
-Nausea: This is a big one for a lot of people but I didn't have a lot of it and was able to keep an appetite and eat. When you have chemo they will give you medication for this and also a prescription to take home for appetite and nausea. The nausea med Zofran didn't help me much but the appetite med Megestrol did.
-Heartburn: This was a big one for me. The antacid the doctor prescribed was a must. I made sure to not eat after 8:00 because it aggravated the symptoms.
-Acid Reflux: Also helped by antacids. If you have throat pain, gargling with warm salt water helps.
-Headache: I only used extra strength Tylenol and got by ok. *This was mostly a symptom of steriods which they gave me for inflammation.
-Chapped Lips: Use a washcloth and warm water and rub the excess skin gently. Apply vitamin E. Chapstick was not enough.
-Dry Skin: Get yourself some really good moisturizer especially for your face. Now is not the time to go cheap. Chemo dries out everything.
-Constipation: Drink tons of water. Ask your doc for advice if this is persistent.
-Hemorrhoids: Go with the above symptom. My doc prescribed Proctofoam which worked wonders.
-Neuropathy: A damage to the nerves. You will feel a tingling/numbness/slight burning in your hands and feet. Tell your doc immediately if you experience this! They can tweak your meds to alleviate it (I found out too late). I am still working on recovery of this but it is coming back slowly.
-Fatigue: You will be tired but move as much as possible. It helps to take short little walks and do regular chores. Laundry helped me to feel like I had a normal routine. Ask for help if you need it and rest if you need to. Remind yourself that you can say no to activities or visits from people.
-Body Aches: My bones ached. Hot baths with Epson salt and lavender helped out a lot. You can buy bags of it at most drug stores. They also helped me to relax and sleep at night.
-Chemo Head: Sometimes I would zone out and get confused. I had to give myself time and be patient and write things down or have my family do so.
-Hair Loss: Happened gradually for me. I collected hats, scarves, and wigs. Wigs can be expensive but they have some really cool ones now. Your doc can write a prescription for one and your insurance might pick up the tab or some stores give discounts for chemo patients. Check around.
*Medications have their own set of delightful side-effects:
-Steroids: They are given to you during chemo to help with side-effects. They can cause side-effects of their own including sleeplessness so research this one. I had to start slowly and stop slowly with them.
-Pain Medication: I was given major meds in the hospital and sent home with none. This caused MAJOR problems for me. Make sure to take the least amount possible and that you step down from them by taking less and less until you stop.
If you have any questions about any of these please feel free to comment. I would like to add that a good multi vitamin and B vitamins have helped me a lot. You can also ask for a B12 shot if you think you need it. I was really tired and found out I needed blood transfusions because my cell numbers were low. Remember to tell your nurses and doctor everything that is going on with you even if you think it is nothing. Hang in there, ask, and research. You can do this!
Stay tuned as next time we tackle "Yes, I have Cancer" Connecting With Other People.
This is by no means the whole list of side-effects but I would strongly encourage you not to go to lists (they are very long) because they will only scare you and you will end up looking for things to happen to you. Try to only look up side-effects that you are currently experiencing and their treatments. A good resource is www.chemocare.com but there are certainly others and forums you can join for questions, info, and support. I belong to www.cancerforums.net which is free to join and has people with your specific diagnosis that you can talk to. I found that these side-effects were mostly chemo-related and eventually faded after treatment. Now let's get crackin' and name some names!
-Nausea: This is a big one for a lot of people but I didn't have a lot of it and was able to keep an appetite and eat. When you have chemo they will give you medication for this and also a prescription to take home for appetite and nausea. The nausea med Zofran didn't help me much but the appetite med Megestrol did.
-Heartburn: This was a big one for me. The antacid the doctor prescribed was a must. I made sure to not eat after 8:00 because it aggravated the symptoms.
-Acid Reflux: Also helped by antacids. If you have throat pain, gargling with warm salt water helps.
-Headache: I only used extra strength Tylenol and got by ok. *This was mostly a symptom of steriods which they gave me for inflammation.
-Chapped Lips: Use a washcloth and warm water and rub the excess skin gently. Apply vitamin E. Chapstick was not enough.
-Dry Skin: Get yourself some really good moisturizer especially for your face. Now is not the time to go cheap. Chemo dries out everything.
-Constipation: Drink tons of water. Ask your doc for advice if this is persistent.
-Hemorrhoids: Go with the above symptom. My doc prescribed Proctofoam which worked wonders.
-Neuropathy: A damage to the nerves. You will feel a tingling/numbness/slight burning in your hands and feet. Tell your doc immediately if you experience this! They can tweak your meds to alleviate it (I found out too late). I am still working on recovery of this but it is coming back slowly.
-Fatigue: You will be tired but move as much as possible. It helps to take short little walks and do regular chores. Laundry helped me to feel like I had a normal routine. Ask for help if you need it and rest if you need to. Remind yourself that you can say no to activities or visits from people.
-Body Aches: My bones ached. Hot baths with Epson salt and lavender helped out a lot. You can buy bags of it at most drug stores. They also helped me to relax and sleep at night.
-Chemo Head: Sometimes I would zone out and get confused. I had to give myself time and be patient and write things down or have my family do so.
-Hair Loss: Happened gradually for me. I collected hats, scarves, and wigs. Wigs can be expensive but they have some really cool ones now. Your doc can write a prescription for one and your insurance might pick up the tab or some stores give discounts for chemo patients. Check around.
*Medications have their own set of delightful side-effects:
-Steroids: They are given to you during chemo to help with side-effects. They can cause side-effects of their own including sleeplessness so research this one. I had to start slowly and stop slowly with them.
-Pain Medication: I was given major meds in the hospital and sent home with none. This caused MAJOR problems for me. Make sure to take the least amount possible and that you step down from them by taking less and less until you stop.
If you have any questions about any of these please feel free to comment. I would like to add that a good multi vitamin and B vitamins have helped me a lot. You can also ask for a B12 shot if you think you need it. I was really tired and found out I needed blood transfusions because my cell numbers were low. Remember to tell your nurses and doctor everything that is going on with you even if you think it is nothing. Hang in there, ask, and research. You can do this!
Stay tuned as next time we tackle "Yes, I have Cancer" Connecting With Other People.
Wednesday, January 19, 2011
Hair! Not the Musical
Gimme head with hair
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen
Give me down to there hair
Shoulder length or longer
Here baby, there mama
Everywhere daddy daddy
Hair, hair, hair, hair, hair, hair, hair
Flow it, show it
Long as God can grow it
My hair
- From the musical "Hair"
Let's be honest, we are all concerned with hair and our own in particular. Whether we have it or not, how long it is, does it mysteriously hide one eye, does it identify us with a particular group of people, do we add fake extensions. I must admit after watching "The King and I", I had a major thing for good old Yule Brenner and he didn't have a lick of hair. If we are diagnosed with cancer and are starting chemo it's like a ticking clock goes off somewhere in your mind and you are asking yourself, "When's it going?" I can only tell you what happened to me because everyone is different. I did however get some pretty good advice and I will share it with you.
Odds are good you will loose your hair. Everyone hears a rumor that someone's aunt or friend never did but I did and probably so will you. Plan ahead. If you have long hair like I did, a good idea is to give it a good short cut in the beginning. DO NOT SHAVE IT at first. You will be tempted to do this. The hair thing was on my mind when I had my husband drive me down to the local barber shop to get some good advice from the experts. Luckily one of the guys mom was a cancer survivor so he knew what he was talking about. He told me not to shave it because you will end up with little pointy hairs everywhere when they fall out. Think of it! In your clothes, in your pillow stabbing you, ugh. They told me after I cut it short to let it fall out on it's own, then when I was done with chemo it would start to grow back and we could trim it all one length or shave it and it would grow at the same rate.
You might wonder, "Well what about those comb-over strands? I don't want to look like The Donald!" I know I know, I did too. Here's what you do:
-Collect some really cool scarves. There are some cool web sites for scarf tying. Here is one www.tznius.com.
-Collect some hats that you like (soft ones are best). You can get crochet hats for really cheap on ebay. Remember that hats will fit differently when hair is gone. My mom made me a crochet hair net for under my hats that were bigger when this happened.
-Wear jewelry that makes you feel good on your neck and ears.
Your hair will probably fall out after the second chemo. Some loose theirs after the first. It will mostly fall out in the shower because the shampoo and hot water loosens the follicles. Get a drain cover or you will have plumbing trouble. Get a hair net and wear it at night. You might even want to put a towel over your pillow so it won't go everywhere. I did not loose all of mine at once but gradually and my eyelashes and eyebrows actually GREW until the very end. They fell out when they were replaced by the new ones which made it less traumatic. I just drew the eyebrows in and wore fake eyelashes that looked natural.
Truth be told, you men will have an easier time with this due to the fact that it is fashionable for men to have shorter or even bald heads. Please don't draw in your eyebrows or wear fake lashes. For us chicks it is hard. It's ok and not vain to cry about it. I cried when I lost mine because I felt ugly and that maybe my husband would think so too. The truth is that those that truly love you will be supportive and remember it is not forever. Mine is growing back quickly and I am only one and a half months after my last chemo. It is about 1/8 inches and I had my stylist daughter shave it. It is coming in very soft and new and I am proud to say I sort of look like GI Jane without the muscles which encourages me to get exercising again!
Hang in there and look through some hair magazines with short cuts. The good news is that short is in! Stay tuned for next time when we talk about What's the Deal With Side-Effects?
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen
Give me down to there hair
Shoulder length or longer
Here baby, there mama
Everywhere daddy daddy
Hair, hair, hair, hair, hair, hair, hair
Flow it, show it
Long as God can grow it
My hair
- From the musical "Hair"
Let's be honest, we are all concerned with hair and our own in particular. Whether we have it or not, how long it is, does it mysteriously hide one eye, does it identify us with a particular group of people, do we add fake extensions. I must admit after watching "The King and I", I had a major thing for good old Yule Brenner and he didn't have a lick of hair. If we are diagnosed with cancer and are starting chemo it's like a ticking clock goes off somewhere in your mind and you are asking yourself, "When's it going?" I can only tell you what happened to me because everyone is different. I did however get some pretty good advice and I will share it with you.
Odds are good you will loose your hair. Everyone hears a rumor that someone's aunt or friend never did but I did and probably so will you. Plan ahead. If you have long hair like I did, a good idea is to give it a good short cut in the beginning. DO NOT SHAVE IT at first. You will be tempted to do this. The hair thing was on my mind when I had my husband drive me down to the local barber shop to get some good advice from the experts. Luckily one of the guys mom was a cancer survivor so he knew what he was talking about. He told me not to shave it because you will end up with little pointy hairs everywhere when they fall out. Think of it! In your clothes, in your pillow stabbing you, ugh. They told me after I cut it short to let it fall out on it's own, then when I was done with chemo it would start to grow back and we could trim it all one length or shave it and it would grow at the same rate.
You might wonder, "Well what about those comb-over strands? I don't want to look like The Donald!" I know I know, I did too. Here's what you do:
-Collect some really cool scarves. There are some cool web sites for scarf tying. Here is one www.tznius.com.
-Collect some hats that you like (soft ones are best). You can get crochet hats for really cheap on ebay. Remember that hats will fit differently when hair is gone. My mom made me a crochet hair net for under my hats that were bigger when this happened.
-Wear jewelry that makes you feel good on your neck and ears.
Your hair will probably fall out after the second chemo. Some loose theirs after the first. It will mostly fall out in the shower because the shampoo and hot water loosens the follicles. Get a drain cover or you will have plumbing trouble. Get a hair net and wear it at night. You might even want to put a towel over your pillow so it won't go everywhere. I did not loose all of mine at once but gradually and my eyelashes and eyebrows actually GREW until the very end. They fell out when they were replaced by the new ones which made it less traumatic. I just drew the eyebrows in and wore fake eyelashes that looked natural.
Truth be told, you men will have an easier time with this due to the fact that it is fashionable for men to have shorter or even bald heads. Please don't draw in your eyebrows or wear fake lashes. For us chicks it is hard. It's ok and not vain to cry about it. I cried when I lost mine because I felt ugly and that maybe my husband would think so too. The truth is that those that truly love you will be supportive and remember it is not forever. Mine is growing back quickly and I am only one and a half months after my last chemo. It is about 1/8 inches and I had my stylist daughter shave it. It is coming in very soft and new and I am proud to say I sort of look like GI Jane without the muscles which encourages me to get exercising again!
Hang in there and look through some hair magazines with short cuts. The good news is that short is in! Stay tuned for next time when we talk about What's the Deal With Side-Effects?
Monday, January 17, 2011
Let's Talk Chemo
Chemo is kinda like Al-Qaeda, mysterious, random, hard-hitting, and can strike most anywhere. Chemo's job is to kill cells. The problem is that in the process of killing the bad cells, it takes out the good ones too. You can't prepare for chemo physically but you can plan ahead. Go shopping or do any necessary errands before treatment. Arrange for a loved one or friend to help with meals or cleaning or just to hang with you when you feel crappy. Rent some cool movies.
When I first pictured chemo, it was like one of those commercials for St. Judes playing in my mind. Bald, pale, and gaunt figures floating around with soft piano music in the back round. Not even close. Sure there were a couple of "hair challenged" individuals around but they usually were wearing some kind of cool head wear like myself thanks to my mom who is a crochet master in her own right. I actually heard laughing when we came close to the treatment room.
Here's what will happen:
-A nurse will help you find a chair (we had really cushy lounge types) and get you comfortable. By the way, oncology nurses are in a class by themselves. All of them I met were kind and helpful and this includes the office staff. It takes special people to do what they do on a daily basis. They will ask you a round of questions on how you are doing and any symptoms you are having. Make sure to tell them EVERYTHING even if you think it is insignificant.
-You will probably have your blood drawn, depending on the type of cancer you have to check cell, iron levels, etc. Some people have a traditional IV and others have a port which is a kind of plug in the chest to put the IV in.
-An IV bag will be brought over and hooked up for your first round of medication. I had three different bags including an orange colored one that I liked to call Koolaide. Your bags will depend on what type of chemo you have for your treatment. Make sure to ask what they are giving you and write it down for reference.
Treatment takes about an hour and a half. If you bring a spouse, family member, or friend, they cannot sit in the treatment room with you because of the medication present (at least mine couldn't). They will have to wait in the waiting room.
Helpful tips:
-Pack a comfy blanket or throw for your lap, magazines with cool pictures, music player, snacks, a drink, anything to help you feel as comfortable as possible.
-Eat a small protein meal before you go (I ate a PB sandwich). This will help your stomach which can be very sensitive to chemo. More on side-effects later.
-If you feel up to it try to connect with other patients and be an encouragement. This will help you also.
-If you get a bad taste in your mouth suck on lemon drops or Jolly Ranchers.
-Some people have a shot the next day after chemo to build blood cells.
Chemo has different side-effects for everyone, that is why the list is like trying to read the latest congressional health care bill. My solid advice is to stay away from the list! Only check out specific effects that are going on with you at the moment. The reason for this? If you are anything like me, I will read it and commiserate and swear I have every single one. A good website is Chemocare.com. They have a list and advice on most areas of cancer. I only had vomiting one time after the first treatment. I could eat and had an appetite the rest of the time! So remember when you've heard that everyone is sick and nauseated and can't eat it may not be right info. Eating is life for the cancer patient so go for it. Eat sensible but you can spoil yourself once in a while. There are a lot of opinions on nutrition out there and people that swear that drinking some kind of grass will cure you. You can decide for yourself but I just ate regular food and am a survivor.
Now is a good time to take care of yourself. Light candles and take scented baths (lavender is great for relaxation). Use luxurious lotions, soaps, and perfumes that you like (after shave for the men of course). Chemo effects last about a week, then you start feeling better. Call your oncologist if you have any questions or concerns and ask for help if you need it. It is ok to feel weak, tired, crabby, angry, or sad. Cry if you need to, it will help you release emotions. Hang in there and fight!
Hopefully this info will help you in your journey. Stay tuned as next time I talk about hair.
When I first pictured chemo, it was like one of those commercials for St. Judes playing in my mind. Bald, pale, and gaunt figures floating around with soft piano music in the back round. Not even close. Sure there were a couple of "hair challenged" individuals around but they usually were wearing some kind of cool head wear like myself thanks to my mom who is a crochet master in her own right. I actually heard laughing when we came close to the treatment room.
Here's what will happen:
-A nurse will help you find a chair (we had really cushy lounge types) and get you comfortable. By the way, oncology nurses are in a class by themselves. All of them I met were kind and helpful and this includes the office staff. It takes special people to do what they do on a daily basis. They will ask you a round of questions on how you are doing and any symptoms you are having. Make sure to tell them EVERYTHING even if you think it is insignificant.
-You will probably have your blood drawn, depending on the type of cancer you have to check cell, iron levels, etc. Some people have a traditional IV and others have a port which is a kind of plug in the chest to put the IV in.
-An IV bag will be brought over and hooked up for your first round of medication. I had three different bags including an orange colored one that I liked to call Koolaide. Your bags will depend on what type of chemo you have for your treatment. Make sure to ask what they are giving you and write it down for reference.
Treatment takes about an hour and a half. If you bring a spouse, family member, or friend, they cannot sit in the treatment room with you because of the medication present (at least mine couldn't). They will have to wait in the waiting room.
Helpful tips:
-Pack a comfy blanket or throw for your lap, magazines with cool pictures, music player, snacks, a drink, anything to help you feel as comfortable as possible.
-Eat a small protein meal before you go (I ate a PB sandwich). This will help your stomach which can be very sensitive to chemo. More on side-effects later.
-If you feel up to it try to connect with other patients and be an encouragement. This will help you also.
-If you get a bad taste in your mouth suck on lemon drops or Jolly Ranchers.
-Some people have a shot the next day after chemo to build blood cells.
Chemo has different side-effects for everyone, that is why the list is like trying to read the latest congressional health care bill. My solid advice is to stay away from the list! Only check out specific effects that are going on with you at the moment. The reason for this? If you are anything like me, I will read it and commiserate and swear I have every single one. A good website is Chemocare.com. They have a list and advice on most areas of cancer. I only had vomiting one time after the first treatment. I could eat and had an appetite the rest of the time! So remember when you've heard that everyone is sick and nauseated and can't eat it may not be right info. Eating is life for the cancer patient so go for it. Eat sensible but you can spoil yourself once in a while. There are a lot of opinions on nutrition out there and people that swear that drinking some kind of grass will cure you. You can decide for yourself but I just ate regular food and am a survivor.
Now is a good time to take care of yourself. Light candles and take scented baths (lavender is great for relaxation). Use luxurious lotions, soaps, and perfumes that you like (after shave for the men of course). Chemo effects last about a week, then you start feeling better. Call your oncologist if you have any questions or concerns and ask for help if you need it. It is ok to feel weak, tired, crabby, angry, or sad. Cry if you need to, it will help you release emotions. Hang in there and fight!
Hopefully this info will help you in your journey. Stay tuned as next time I talk about hair.
Sunday, January 16, 2011
The Power of NO!
It is definitely true that knowledge is power and in the case of a potentially terminal disease it is immensely important for you as a patient to gain as much knowledge as you can about your condition so that you can be proactive in your treatment. Another tip I want to share is something that I learned far too late in the game: - You have the power to make decisions about your treatment and care. I want you to know early on that you too have the power of "No."
Did you know that your doctor or caregiver works for you and not the other way around? It is your precious, blood sweat and tear bought and dearly payed for insurance that pays the bill for his precious business-grey Mercedes coupe parked out in that special doctor's parking space in the hospital parking lot. Did you know that you do not have to play the good and compliant patient and go along with every lame or flaky diagnosis, every quack cure, or sit calmly on the exam table in tears while he talks on the cell phone about his Greek vacation? (this actually happened to me).
The power of "no" came to me in the hospital like a lightning bright LED bulb. I had had just about enough. My body looked like a pin cushion from being stuck so many times. I finally had to have a port put in my chest so they could access my veins that they had completely collapsed and looked like the Santa Monica Mountains. The nurse comes in with a bag of something else to feed into my tubes (I already had three going) and tells me, "Your going to hate me but I have to start an IV for this." I calmly looked at him and said, "No your not, I have a port for that." He did not agree in so many words. I said, "See that sugar fluid bag? Unplug it, I don't need it, then plug yours in." What happened next was ground-breaking! He smiled at me and shook his head and did EXACTLY what I told him to do.
And that my friend, is the power of "no" in action. You have the power to make choices. You know your body best. It took me two months and at least four doctors and countless "procedures" to find out I did actually have something wrong with me like I THOUGHT! And the fight continues. I was sent by my oncologist to a specialist she picked for a second opinion to see if I indeed needed to receive 8 chemo treatments instead of the usual 6 with a possible hospital stay of two weeks. Now this is no ordinary specialist. She is THE premiere lymphoma UCLA specialist of specialists. She told me I was in remission and was probably cancer free from treatment 4. My oncologist called me right before Christmas to give me the news and quipped, "Well, we will give you the benefit of the the doubt." Uh, Thank you?
In conclusion I would like to strongly encourage you to ask questions, research, make proactive educated choices and decisions. It can be intimidating in that cold doctors office nodding your head with a blank "What the heck" expression. Believe me, I know, but I have faith in you. Trust me, they don't always give you the vital info you need. Just remember, you have the power!
Stay tuned as next time we tackle Chemo!
Did you know that your doctor or caregiver works for you and not the other way around? It is your precious, blood sweat and tear bought and dearly payed for insurance that pays the bill for his precious business-grey Mercedes coupe parked out in that special doctor's parking space in the hospital parking lot. Did you know that you do not have to play the good and compliant patient and go along with every lame or flaky diagnosis, every quack cure, or sit calmly on the exam table in tears while he talks on the cell phone about his Greek vacation? (this actually happened to me).
The power of "no" came to me in the hospital like a lightning bright LED bulb. I had had just about enough. My body looked like a pin cushion from being stuck so many times. I finally had to have a port put in my chest so they could access my veins that they had completely collapsed and looked like the Santa Monica Mountains. The nurse comes in with a bag of something else to feed into my tubes (I already had three going) and tells me, "Your going to hate me but I have to start an IV for this." I calmly looked at him and said, "No your not, I have a port for that." He did not agree in so many words. I said, "See that sugar fluid bag? Unplug it, I don't need it, then plug yours in." What happened next was ground-breaking! He smiled at me and shook his head and did EXACTLY what I told him to do.
And that my friend, is the power of "no" in action. You have the power to make choices. You know your body best. It took me two months and at least four doctors and countless "procedures" to find out I did actually have something wrong with me like I THOUGHT! And the fight continues. I was sent by my oncologist to a specialist she picked for a second opinion to see if I indeed needed to receive 8 chemo treatments instead of the usual 6 with a possible hospital stay of two weeks. Now this is no ordinary specialist. She is THE premiere lymphoma UCLA specialist of specialists. She told me I was in remission and was probably cancer free from treatment 4. My oncologist called me right before Christmas to give me the news and quipped, "Well, we will give you the benefit of the the doubt." Uh, Thank you?
In conclusion I would like to strongly encourage you to ask questions, research, make proactive educated choices and decisions. It can be intimidating in that cold doctors office nodding your head with a blank "What the heck" expression. Believe me, I know, but I have faith in you. Trust me, they don't always give you the vital info you need. Just remember, you have the power!
Stay tuned as next time we tackle Chemo!
Saturday, January 15, 2011
The Cancer Journey - Strap Your Belt On!
Right before Christmas I was given the news that the lymphoma that they were treating me for in my chest wasn't really lymphoma at all but scar tissue, which most people have by the way if you have ever had a illness of the lungs ( bronchitis, pneumonia, etc). To add to the mystery, I was told that I was probably cured by the fourth chemo treatment. What? Were the extra two a bonus? And I am still rumbling down the road on the cancer bus only the sign has changed on the top to "Remission."
Have you ever been told that medical science is vague at best? Why do you think it is called a "practice". There are so many things that I have had to find out on my own about symptoms and side-effects that if they were coins they would probably choke the CoinStar machine. My famous last words became "Why didn't somebody tell me about this!" So I will try and use this blog to give you the need-to-know low down on what I have learned so far. Let me know if you have anything specific and if I don't have an answer, I will research it.
In the Beginning:
-Try to wrestle as much information about your diagnosis and treatment strategy as you possibly can from your doc and write it down or as in my case have someone write it down for you (very helpful because you are confused and stressed). This goes for medications you are given also! Some docs have a nasty habit of hit and run when it comes to patients, never mind that you are in a life or death situation here.
-If you are in the hospital and on pain meds, make sure to have a "step down" plan for when you get home and wean yourself off SLOWLY. Don't go for the old "Just go home and rest" line without a med in sight. I did this after having surgery and being on heavy meds for weeks only to experience detox hell when I got home. Have them give you a prescription for recovery and take less and less until you are safe to stop.
-Have someone responsible help you with appointment scheduling and prescription pick-up if you need it. This can be invaluable when you are mentally wiped out.
-Have your oncologist doctor or nurse give you a tour of where you will be receiving chemo treatment or the same if you are having radiation. I had visions of being in a room with a bunch of gaunt, bald people and was scared to death. I found out that it just wasn't the case and actually laughed and made some good friends.
Please stay tuned as I will have more good info and tips on side-effects and other fun subjects. Thank you for checking me out and feel free to ask questions or refer someone you know who is dealing with cancer and it's effects.
-Shurie
Have you ever been told that medical science is vague at best? Why do you think it is called a "practice". There are so many things that I have had to find out on my own about symptoms and side-effects that if they were coins they would probably choke the CoinStar machine. My famous last words became "Why didn't somebody tell me about this!" So I will try and use this blog to give you the need-to-know low down on what I have learned so far. Let me know if you have anything specific and if I don't have an answer, I will research it.
In the Beginning:
-Try to wrestle as much information about your diagnosis and treatment strategy as you possibly can from your doc and write it down or as in my case have someone write it down for you (very helpful because you are confused and stressed). This goes for medications you are given also! Some docs have a nasty habit of hit and run when it comes to patients, never mind that you are in a life or death situation here.
-If you are in the hospital and on pain meds, make sure to have a "step down" plan for when you get home and wean yourself off SLOWLY. Don't go for the old "Just go home and rest" line without a med in sight. I did this after having surgery and being on heavy meds for weeks only to experience detox hell when I got home. Have them give you a prescription for recovery and take less and less until you are safe to stop.
-Have someone responsible help you with appointment scheduling and prescription pick-up if you need it. This can be invaluable when you are mentally wiped out.
-Have your oncologist doctor or nurse give you a tour of where you will be receiving chemo treatment or the same if you are having radiation. I had visions of being in a room with a bunch of gaunt, bald people and was scared to death. I found out that it just wasn't the case and actually laughed and made some good friends.
Please stay tuned as I will have more good info and tips on side-effects and other fun subjects. Thank you for checking me out and feel free to ask questions or refer someone you know who is dealing with cancer and it's effects.
-Shurie
Subscribe to:
Posts (Atom)